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February 2012

February 23, 2012

My question was simple and direct: “What are you doing to take care of yourself?” My client Debbie, the family caregiver I was assisting, reacted as if I’d begun speaking in some Martian dialect.

We’d just discussed how she had spent the better part of three weeks tending to her mother—a formerly mobile senior who had been sidelined by a stroke, and who, on her best days was demanding and quick to criticize. Debbie had taken time off from work, had allowed her own household to fall into disarray, and had cancelled regular social engagements in order to care for her mother. Now, in spite of Mom’s protestations, Debbie was looking for a part time in-home caregiver, with only one goal in mind. “I just want to sleep,” she said. “If I could get six hours of uninterrupted sleep, I’d be fine.”

Unfortunately, I knew Debbie would soon need more than sleep. She would need respite care, to give herself a break more often. She and her mother were entering a new phase of their relationship, one that would likely prove challenging to both of them. Debbie needed help, but she also needed emotional reinforcement. I suggested a caregiver support group; a chance to connect with other sons and daughters who are going through the same things she is facing. “I don’t have time for that now,” she said. “Maybe later. Maybe when Mom’s a little better…” I suggested a support group in Debbie’s community as well as one of Care.com online forums. “After you get some rest, consider getting some support for yourself. Even if you don’t participate, you’ll connect with some kindred spirits,” I said.

I wanted to let Debbie know what years of experience working with hundreds of families has shown me—that her mother would likely stabilize at a “new normal;” that she would be redefining the mother-daughter relationship on a monthly or even weekly basis; that she would have moments of tearful frustration and humbling moments filled with love and gratitude. Mostly, I wanted to tell Debbie that she needs to have lunch and laugh with friends, and she needs to share the caregiving experience with others, if only to realize that she isn’t alone.

I’ll be checking in on Debbie soon, and I plan to offer more information about caregiver support groups. Everyone I know who has gifted themselves with a face-to-face or online support group has benefited from the camaraderie and shared knowledge. The support makes them stronger.

So tell me, if you’re a caregiver, what are you doing to take care of yourself? There are plenty of people like Debbie who need to know.

February 16, 2012

When I asked my father how it felt to turn 85, he responded quickly. “Good,” he said. “My mind is still working. I love food and I love life.”

My father has been suffering from dementia for 15 years. He lives in a nursing home, spends much of his time in a wheelchair, and eats low-fat, easy-to-digest, minced food at every meal. But he wasn’t being sarcastic. His upbeat answer reflects his honest view of his life. Dad may have physical and mental limitations, but his imagination still soars. With a mischievous grin, he’ll regale me with stories of his latest trip to Antofagasta—a real, unremarkable mining town in Chile that he’s transformed into a mythical paradise. In his mind, his trips there include cavorting with mermaids, swimming with dolphins and chowing down on thick salami sandwiches. When my mother visits, they take imaginary trips to Siberia, confab with the Pope in Rome and waltz along the Seine in Paris. They eat rich food and celebrate that it’s plain-old Tuesday.

We tap into Dad’s capacity for a rich inner life, and we are rewarded with a joyful, continuing connection to this man we love. By focusing on what my father can do, we make all the things he can no longer do seem less important.

Dr. John Zeisel, president of Hearthstone Alzheimer Care centers, endorses this approach—engaging the part of patient’s brain that’s still active—and research shows that creative storytelling can help dementia patients with communication, engagement and emotional well-being.

I’ve seen other patients fall down the rabbit hole of Alzheimer’s much more quickly than my father—patients with excellent caregivers, including caring relatives and good in-home care or assisted living accommodations. When I see these elderly men and women blankly staring at the television, or when I watch relatives try desperately to coax memories that will not take shape, I can’t help wanting to intervene. What I’d like to say is this: The person you love is still there—you just have to meet them on new ground. Use your imagination. (Get tips for managing the challenging behaviors of Alzheimer's >>)

Of course, I know there are others who have meaningful communication with loved ones who have dementia, and I’d love to hear what you’re doing. If you have suggestions or a story to tell, please share. What do you do to reach your parent or other loved one -- and how do they respond?

February 09, 2012

‘Tis the season when hearts and flowers abound and even the most curmudgeonly among us can be found picking out a Valentine’s Day card or a perfect red rose. We celebrate the love we have, the love we wish we had, and the promise of love to come. Even my husband and I—parents to three adult children and long past the blushing phase of our romance—have been known to give a nod to this cultural festival of good feeling. And why not? There’s never a bad time to appreciate your life mate.

When it comes to mature love, I’ve had good role models. In fact, I know exactly what my parents will be doing on Valentine’s Day. My 83-year old mother will close her therapy practice for the day and head to the nursing home to visit my 85-year old father. It’s quite possible that neither of them will realize its February 14. My mother visits my father every single day, and because they can spend time together, every day is a special occasion.

Years ago, my parents—he’s a psychologist—might have talked shop at the end of the day. Each loved the other’s intellect, and between terms of endearment and managing the household, they had fascinating discussions. Now, my father has dementia and they no longer manage a household together. But their discussions are still amazing. My mother draws my father to her by telling him stories. Together they take flights of fancy, traveling the world, living in castles and tripping the light fantastic along the boulevards of Paris. They dance together, as she lifts his arms high above the sides of his wheelchair and moves them smoothly from side to side. She sings as they move and he smiles. That smile is the purest expression of love my father can offer, and for my mother, it’s the sweetest Valentine tribute.

My parents’ love affair is different now, but the love and commitment they share remain strong. I’m comforted to think that love evolves along with our circumstances, and I’d love to hear from readers who have seen relationships thrive in the face of illness, dementia and disabilities. Stories about the triumph of love are, to me, much better than bonbons.

February 02, 2012

Like most women my age, I’m a problem-solver. At work, at home, among my family and friends, I’m driven to recognize needs and to summon all the resources I can to meet them. So, when my father was diagnosed with dementia, I immediately set about the business of “solving” the problem of meeting his senior care needs. And that’s when I learned that caregiving isn’t a project with a predictable beginning, middle and end point. Caregiving—especially for someone you love—is a journey that family members take together.

Every day at Care.com, I speak to men and women who are just learning that lesson. They call distraught because their mother or father, or sometimes both, need help. The parents need help, the adult children are willing to arrange and help pay for in-home care or assisted living, but the parents want no part of the plan. “They just refuse any sort of outside help,” cried one client. “I don’t want to steal their dignity, but really, my parents cannot cook and clean and dress properly without assistance. Yesterday my father went for a walk and got lost. A stranger drove him home.”

I heard the fear in her voice. However, letting go of personal autonomy is difficult for many seniors. It requires both admitting some diminished capacity and giving up control of day to day activities. That’s why it’s best to consult experts and learn the full range of senior care options, before presenting those options one step at a time. A parent who balks at the prospect of a full-time home health aide might agree to the gift of a twice-weekly housekeeper, a personal chef to prepare a week of nutritious meals, or a car service to drive him or her to a favorite social outing. Once the door is open to assistance of any kind, other in-home care services, adult day care, or even assisted living can be introduced.

Today my father lives in a nursing home that cares for patients with dementia. My mother visits him every day, and other family members visit frequently. He’s well cared for and, for the most part, happy. But we all went through a progression of different caregiving scenarios before he got there. When he was diagnosed, this is the type of care I felt he needed—but it didn’t happen until he and my mother were ready. Now I’m glad I didn’t rush them, but I’m also confident that my problem-solving skills helped us all make good choices along the way.

If your parents or other family members are or have been refusing help, please share. Comment here and tell me what you’ve tried, what seems to work and what has not worked at all? Your experience may help someone else!

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